Saturday, July 30, 2016

As young people mature, there are those days that mark the next step taken towards adulthood. There is the acquisition of a driver's license, dating, first part-time job, first trip alone without your parents, and more. Each event is noted with glee (and perhaps a little trepidation!) by parents and youth alike, as they celebrate the gradual increase in responsibility and maturity.

For a young person with FASD, those moments are often out of reach, or are unable to be attained until much further down the road. Developmental age doesn't match chronological age, and some things will remain forever out of reach, much to the sorrow of everyone. Some, like Kenny, can straddle two worlds. Others don't fare as well. Kenny is able to bounce between his older and younger with great facility, but there is a reason he is unable to sustain friendships with anyone his own age...he can't remain in that "older" place for too long without needing to have extended periods of true younger aged play. As a camp counselor, this works marvelously well for him, as an almost 18 year old man, it makes life an uncomfortable fit.

However, there are milestones, but we hesitate to mention them or lift them up because there is a sense of loss, or even shame around it all. There is the diagnosis finally obtained, oftentimes after years of what seems like fruitless chasing before finally it is confirmed officially. This may not seem like much, but for an invisible disability like FASD, it can affirm for the parent and child alike that, no, they are not crazy or imagining it, there really and truly is something wrong, regardless of whether a brain functions well for a week here or there and then proceeds to completely malfunction the next. We have celebrated with Kenny when he finally went an entire week making certain his wallet was in his back pocket each morning! We have celebrated when he came out dressed appropriately for the day's weather, and not wearing a polar fleece when it was 100 degrees outside (Seriously, more times than I can tell you!). We have celebrated when he finally, FINALLY learned to read...at 13 years old. Each is an important milestone, regardless of what age it was reached or how insignificant it is for some people...or even if that milestone ends up lost when the behavior backslides a month later.

A young person might perform fabulously in a well structured environment with a timeline laid out and a familiar setting, like Kenny did as a camp counselor, and yet be unable to find their way to the grocery store in a two main street town...as Kenny can't. When cues are able to be taken in by those around them doing things that can be copied, FASD kids can succeed, but when left alone, they can't initiate changes in schedule, or facilitate even the most basic of needs such as making certain their personal hygiene is handled every single morning. FASD is characterized by regular malfunctions...and then seemingly smooth sailing...then malfunctions over and over again, The very lack of consistency is enough to drive you crazy! What was easy yesterday, is completely impossible today.

The patterning takes years, and sometimes, the fact that we have been so successful with Kenny because of his literally having 24/7 therapeutic parenting works against us. Depending upon the setting, others just don't encounter the Kenny we have at home. They don't see the confusion when we walk through an airport and I try to guide him to find his way, and it is impossible because there is too much "data" to take in. They don't see the 17 year old who cries because one day he can do something, and the next for some inexplicable reason, that skill is lost and has to be re-taught. They don't have to watch him in a parking lot as he is blissfully unaware of cars coming behind him because his brain can't make out the direction it is coming from...or that it is even there. They don't see the young man whose voice cracks as he speaks of the frustration of living in a brain like his, unable to recall basic information some days, or able to follow a simple recipe on the back of the Kraft Macaroni and Cheese box. Give him a lunchroom and food that appears, give him a tightly held schedule, give him a single task and he performs like a rock star. However, try to have him live autonomously as most kids his age are doing, and he is lost, unable to perceive when it is time to go to bed or rise for the morning, unable to initiate any activities of his own volition without them being suggested, unable to even keep himself clean or dressed appropriately without gentle reminders. His intellect belies it all, but his arriving at the retreat for counselor training without sleeping bag, pillow, or towel after having gone to camp for 10 years is our daily norm.

Thursday we had another milestone to celebrate, one that would might force some parents to grimly accept the inevitable, and the young adult to hang his head in shame. We had an appointment with attorneys to discuss legal care for Kenny in the future. Turning 18 in November, Kenny will likely need help with his finances and medical care all his life, along with numerous other activities we all take for granted. We began working on Medical and Financial Powers of Attorney for Kenny, and he was present to ask any questions he had, and to be part of the entire process. It just so happens that one of the attorneys in the meeting has an adult daughter adopted from China, and there was a tangible understanding of our situation because of that. God arranged that one, we didn't...we had no idea prior to entering the room that Kenny's needs might be so well understood.

Waiting for our appointment.

On the drive over to the office prior to picking up Dominick, Kenny and I talked about how important this day was for him. "This is just as important for you as other things are for your brothers and sisters. You need this to move safely into your adult life, and we are going to make sure you have all the support you need to be all you can be in the world." I shared with him.

"While I wish I didn't need it, " Kenny responded, "I am so glad it will be taken care of and that I won't have to figure this stuff out all alone. But I bet this is a sad day for you, mom, and dad, too. No one signs up to have kids like me."

"Sad? NO! While I wish things were different, I am happy you are so high functioning that you can take part in this in a meaningful way. And I am also refusing to see you moving into your adult life as sad, but instead as a gift and a surprise. Who knows what you will do? Who knows what you will accomplish? You have so much going for you, Kenny, so much to work with versus many kids who will never get half as far as you have! And, we aren't even done with high school yet, I am sure that with the right help, you will attain your dreams of being in ministry somehow, even if in a less traditional way, and that you will do something with your life that really matters. This paperwork is important, but I am not going to view it is 'settling' or to feel bad about it, in fact I am celebrating that we have come so far and have figured out what we need to have in place to not only protect you, but to help you blossom. You have a long way to go, so much more to learn, so much to discover, and having the right protection in place ensures that you are safe and can focus on what is important rather than struggle with what is impossible." and I sat there quietly afterward.

"I am so lucky to have you and Dad. Most parents would be so disappointed, but you always give me hope. You are also very realistic with me, which helps more than you might know. Hiding from what doesn't work never helps. Thanks, mom."

No Shame. No Hiding. The truth really does set you free, and we are celebrating that Kenny is who he is; a wonderful. bright, amazing survivor of more than most of us could handle! This family doesn't hide from the truth, we embrace it, we work with it, we accept it, and we look for ways to celebrate wherever we can.

FASD is nothing to be ashamed of, neither is living with your family as an adult or having the wisdom to ask for help when you need it. The shame would be in hiding from it.

Kenny and I have work to do, research to explore, and hopefully a new blog to create where we will share what we are learning, and where he and I will both write about what this all feels like. It is our way of working with it, of helping others perhaps understand what it is like to live in and with a brain like Kenny's. There are also ministry avenues to pursue, high school to finish, and a slowly emerging adult to enjoy.

Friday, July 22, 2016

I went to bed long ago, and here I am up again. It seems there is something that needs to be written, something that won't allow me to rest until it is captured in digital form and displayed, and maybe then sleep will come. There are moments like this when I have no earthly clue why a thought grabs hold of me and shakes me until I DO SOMETHING. Sometimes that something is to write a blog, sometimes it is to call someone, sometimes it is to read something. Over time, I have come to trust this instinct despite the fact that I may never understand, and because of the fact that once acted upon I will then finally have peace.

Tonight, the Spirit swooped in and sat awhile on my shoulder, reassuring in Its presence and awe inspiring in Its power.

Kenny is in a confounding and terribly heart breaking place, a place I wouldn't wish on any teen. I have held him in my arms as he has cried out in the greatest pain imaginable that his disability combined with his sexuality will mean a life of loneliness and dependence. The words "I will be a burden" have been spoken far too many times by him, and the yearning to know that love will be, at the very list, possible for him is an ache that is hard to even write about here.

How does one parent through this sort of grief and uncertainty? How can one offer comfort and assurances that he will be the one to defy the odds that are stacked so high against him and not sound like an overly optimistic mom who is unable to grasp the full weight that he is carrying?

I have yet to figure it out, and daily I question what in the heck I am doing here, and how can I ever be what he needs me to be.

FASD and LGBT are an alphabet soup that collides in his mind and equals UNWORTHY.

Living where we live, there are no PFLAG groups and almost no one who understands the limitations of FASD. Kenny has never met anyone like himself, other than Angela and Olesya who are far more mildly effected (we are certain at this point), who lives with the crazy combination of learning disabilities that make normal life nearly impossible. He has never met anyone like himself who will never safely drive a car, or be able to live on their own.

Just yesterday evening Dominick and I discussed the importance of my reaching out for Kenny to find "his people", and that we need to somehow find a way to fund his attending conferences on FASD with me so that he can hear stories of success and how best to maneuver through a world that, as of yet, has very little research available and few resources for adults with FASD. As important as it is for Matt to have his future supported and nurtured with attendance at flight camps, it is equally important for Kenny to have his future supported and nurtured with attendance at progressive Christian conferences. Just like Matt, he feels a calling in his life that is just as real, just as valid, and just as necessary to fuel. The harder part is that for Kenny, the only way to pursue some of this is to travel out of our area, and he also can't do it alone as Matt could this year, necessitating a lot more money being spent. Somehow, we will figure it out. He needs desperately to feel less alone in his diagnosis, and he needs to feel as validated around his future as any other kid, too.

Participating in a few Facebook groups for FASD as a lurker, I have gradually become aware of just how blessed we are. You see, it is no exaggeration at all to say that adults as effected as Kenny absolutely can not make it on their own without considerable supports in place. Reading the stories of young adults, parents, and others whose lives are impacted by FASD is a real eye opener...continual job loss, repeated encounters with the law, explosive emotional outbursts caused by frustration and lack of emotional regulation, homelessness, and more fill my screen and have me whispering prayers of gratitude that Kenny is emotionally more stable than most with FASD.

It is in this place that my heart has dwelled this past year, and it is a hard, hard place for the parents of an FASD adolescent. There is little that is positive, there is little in terms of services available or able to be qualified for, and there is little guidance about adulthood for your child.

Pleading for help and hope, my prayers have been ever more fervent. How can I help Kenny see that love might come his way? Concretely, I prayed for someone...anyone...who might be able to be held up as a "this is possible" sort of model as an encouragement for Kenny.

Oh, how the Spirit listens! Oh, how the Spirit provides in the most astounding ways!

Now, I know that some of my more theologically conservative friends probably have been dismayed when reading about our open acceptance of Kenny's sexuality. They may have trouble seeing that our family attending a church open to the LGBT community long before there was even a thought of Kenny being in our midst was God preparing us for Kenny's eventual needs. Those whose religious teachings point toward the "sinful nature" of homosexuality may have a difficult time imagining the Spirit serving to be just as present for us in our life as it is in theirs. I have no issue whatsoever with those whom I love who have a different perspective on any of this, however it is not a belief I have ever held.

I am, however, deeply grateful to be in relationship with a God whose love is not limited, whose provision is not narrowly defined to being only for those with "right thinking", whose presence is just as potent, just as powerful, and just as encompassing as it is for any other Christ follower. Humanity likes to divide into categories and split hairs, God just wants our hearts and our longing for presence...and God shows up regardless of how humans like to say God shouldn't or won't based upon our infinitesimal ability to comprehend the vastness of God's love for us all.

God showed up miraculously tonight in the form of a man named Tim, the loving husband of a man

with FASD. Reaching out based on a single post I read on Facebook, I asked Tim privately if he would mind visiting a bit, and it led to a rich exchange online that I couldn't have possibly arranged had I ordered it through prayer on a menu. In the person of one kind man, there was hope for love from a non-FASD effected gay partner, an understanding of adoption and race issues, an admission of how hard it can sometimes be to be the caretaker, and the unexpected and beautiful fellowship of someone who is a person of faith and worships within our own denomination in a much larger city.

God knew what Kenny needed. What surprised me was God knew what I also needed even though I had no clue I was in need at the moment, and provided for me as well through this conversation. At times I have left myself out of the equation, not realizing that I too have suffered because of FASD, I too have struggled because of FASD, and I too grieve a future that won't be the same because of FASD. I too have no one to talk to who understands the complexity of intertwined issues that make for a remarkably intelligent person before me, and yet an equally remarkably disabled person before me that no one who isn't knowledgeable about FASD can understand. I am the interpreter of the world for him, and of him to the world, a role that is taxing in ways I can't explain...and yet Kenny is so dear and precious I am eager to jump into that role for him.

Isolation is a soul killer. The Spirit brings us together to nurture and care for one another in striking ways, and in amazement I shake my head yet again, and wonder how anyone can ever think God would find it preferable for someone to be "out" and others "in". Our little pea sized brains just can't fathom that kind of love. The world would be infinitely better if we could.

Monday, July 18, 2016

I have two hours alone in my house, something that seldom happens in my life. It is hard to even allow myself to feel that gleeful giddiness right now, as my heart is laden with layer upon layer of emotions bubbling up from the depths of brokenness.

Don't get me wrong, it is all so necessary, so powerful, so good...and so very painful. At times, it seems endless, as if we will never reach the bottom of the pit. Then I remind myself that I, too, am a work in progress, a product of every event, interaction, and relationship. We are all crushed and reborn on a daily basis, and as Josh recently pointed out in his own words, everyone has "luggage" to carry around, it is just different for each person.

I think you get to this age with your kids, and you allow yourself the illusion that you have worked through the hard stuff, and it should all get easier. While that may very well be the case for some, we seem to be revisiting issues at a much deeper level, processing and working with a wellspring that feels somehow quite fresh. As a matter of fact, at times this feels like it is harder than ever.

I want to write in more detail, I want to share so others can perhaps know that they are not alone in their journey with their children, but for some reason, I just can't. I can't seem to get it right, can't seem to convey what it feels like to hold your almost-adult-sized child whose body is wracked with pain as the sobs burst forth. Two children this week have cried out in great anguish, "It's so unfair! It's just not fair!" as they examined what never was, or what may never be. We have one admitting that every single morning in life they awaken with anxiety clutching their heart that somehow their entire family has disappeared or will do so, and they will be left alone. Another whose heart aches to have photos of themselves as a baby or a toddler, who yearns to hear stories of what they were like when they were little...and who wonders if either birth parent has even given them a second thought. The pain is as tangible as if they had been injured physically. Yet another child is coming to grips with his future that will never, ever look like anyone else's, and trying very hard not to give up and give in. The grief washes over him anew as this reality becomes more and more internalized, as dreams of what might have been possible must be released and he stands in the void of what could have been and what will likely be.

And there I am, on the periphery, wishing with all my heart that there was something I could do to ease the suffering, knowing there isn't a darn thing I can really do but pull them close, whisper softly into their ear that I am here for them, that I understand, and that I see the unfairness of it all, too. I offer with each one to be the one to carry it when the load grows too heavy, I ask them to symbolically hand it over to me to give their souls a much needed rest, and then to let me help carry it when they are ready to pick it back up. I brainstorm with them, suggesting strategies for how best to deal with the facts that can never be erased. My tears mingle with theirs, as we rock back and forth in silence, each grateful that if it has to hurt this bad, at least we are not alone with it.

I know there are some who say they could never love a child that is not of their blood. All I can think of is that my love for each of them runs so deep I can't even imagine it being different from a biological child, and that I would even have them ripped from my arms and lose them if I thought it were ever possible to turn back the hands of time and have their life story change to be one filled with light and love from the moment of their birth.

I can't fix it for any of them, and that will be the single most frustrating piece of knowledge of my entire life.

Luckily, I don't need to. Even in these most poignantly difficult times, the Spirit swoops in and hovers around us all, comforting through others, providing opportunities at critical moments, and refreshing our souls when it feels like it is all too much.

For me, that Spirit often comes in the very form of the suffering before me. On the camp run to Colorado Springs this weekend, we gathered around a table at a restaurant and with two boys simultaneously working desperately to choke back overwhelming emotions, Angela turns to me and asks, "So mom, how do you do it? How do you manage to handle all of this from every one of us and still be OK yourself?" Matt threw in other questions, and we discussed how faith helps us, how leaning on one another is so important, how honesty and revealing our heart aches is an absolute must so that none of us sink into a place too murky to bear. I pointed out the courage it takes to show your pain in front of others, and how that was the healthiest way to deal with it rather than stuffing or ignoring those feelings. I also pointed out that crying in front of others is permission giving to those who also feel weighed down and need to release it all. I never imagined a table at Applebee's to be an alter, where in quiet conversation we each, in our own way, thanked God for the presence of the others in that booth and placed our sorrow and grief before the only entity that can ever really offer the soul-deep solace we all needed in that very moment. One of our more concrete family sayings has grown to become "Hard isn't bad, hard is just hard." Laying out our burdens before one another and before God helps us feel less alone, and we can be pointed toward the recognition that we can truly make it through the hard stuff, and we will likely come out stronger and better for it. Hard isn't bad, hard is just hard.

God is with us. God is with us. God is with us. Throughout it all, God is with us.

And there was joy...oh, there is always so much richness and joy throughout it all!

I watched as we dropped off each of the kids but Josh, and not a teen would part ways without every single one of them warmly embracing one another as well as their mom. "I love you's" were boldly spoken aloud in front of others with absolutely no reticence.

And there was joy.

I witnessed them embracing another in love, as our teenage friend Billy was dropped off at the airport, and all wanted to accompany him to security while I circled the airport.

And there was joy.

I saw Kenny as he admitted through sobs as well as laughter that he had totally given up on his life, but that being a camp counselor had served to be a "mirror moment", and he now saw that some sort of meaningful life was indeed possible for him...and the seed of a couple of realistic dreams began to emerge. I have my son back, thanks to the intervention of others, the young man who will grab hold for all it is worth was lost to me for a short season. Hearing him weep almost inconsolably as he tried to speak saying, "I have hope now, I have hope...I can do something that matters and impact lives." was a lightning bolt moment I was privileged to be present for. We cried together over what will never be, and we dared speak of what might eventually be. New life, optimism for the first time in a year or more.

And there was joy.

I saw Angela be able to enter fully into being a high school kid as she anticipated camp, and let other concerns about straddling adulthood and childhood slip away for just awhile. Giddy as she put her hair in curlers the night before, and packed...and repacked...and repacked her bags. Old life prior to adoption faded and the present was something to anticipate, and will no doubt change her.

And there was joy.

I sat beside my 13 year old son, and for five hours straight we talked on the drive home. No radio, no uncomfortable silences, just meaningful conversation about things that matter. As each mile passed, his smile returned, his heart felt lighter, and his strategic plan for working through anxiety began to take shape. About twenty minutes from home, he surprised me with one of the sweetest things I have ever been told as a mom.

"You know when we drove over to the Middle School Fall Retreat this last fall?" he asked.

"Yea...why?"

"When I was getting out of the car to get my stuff, I almost didn't want to stay." he responded.

"Why? Were you nervous about being alone there at your hard time of the year?" I asked.

"No, I was just thinking to myself that I had spent five hours talking with the coolest person in my life, and I could have happily driven five more hours and kept talking with you. It wasn't about me being afraid or nervous, it was because I enjoy my time with you so much, and you always make me think about things as deep as it happens at camp. I just realized then, like I feel right now, that I am really lucky to have you in my life." he said.

Saturday, July 02, 2016

Our family lives in a world of daily juxtaposition, some more poignant than others. This week has been a stark reminder that it is hard to straddle two worlds, and hard to hold on tight while you wend your way through darkened paths.

We don't compare in our family, even in families without the wide disparity that ours has it is unfair and damaging in all kinds of ways. In our family, where everyone struggles with some challenge not of their own making, it is even more cruel, and we are blessed to have kids who support and encourage one another rather than hinder and harm.

But sometimes, the contrast is startling and impossible to ignore.

We have two sons that are 8 months apart, but often 10 years apart in terms of development. Matt is actually 8 months younger than Kenny is, Kenny is technically the "big brother", and yet that has never been the case. Kenny deferred to Matt from Day 1 (as has Angela, who is also older than Matt), and as time moved on and the boys grew older, it was clear Kenny would always remain behind developmentally. Of course, we now have an explanation as to why, but we were puzzled for a very long time over this difference.

Tonight, we sat Kenny down at the table and had a long talk with him. Our almost 18 year old son can not schedule his day without help, his mind doesn't "trigger" him to do simple things like get up at a regular time in the morning and prepare for the day without reminders, to mix up his day with a variety of activities without someone suggesting those things, or even to look around his room and see what needs to be done to clean it without guidance. He is perfectly happy doing whatever is asked of him, but Fetal Alcohol Syndrome has robbed him of the ability to "see" the world the way the rest of us do.

This has been a hard year for Kenny, and he is working emotionally with a now-clear diagnosis, and there is a bit of a letting go of hope that we are seeing, a giving up on himself and his future that is incredibly hard for him to imagine, as it would be for any of us facing such a difficult life with no true independence. Who can he be? What will he be capable of? Why not just let everyone else carry the load of his life since he can't really carry it anyway? While there is no real evident attitude displayed, there is a definite lack of motivation we are seeing, and so we had to call him on it hard this weekend. He admitted it is very hard because he can't figure out who he will be, or how to be who he might want to be. Having a sharp intellect (trust me on that one, better than average, by far) and yet a diminished capacity to function in the world in very important ways is more of a challenge to work with than one might imagine.

We made it clear that we are here for him all the way, and yet we will only give him 100% if he gives us 100% effort back. Success for him is not measured by achievement, but by hard work. We established with him that he is welcome to live with us as his Support Team our entire lives, but not if he won't work as hard on his own behalf as we are willing to work for him. He gets it, and we drew up a schedule, and some concrete tasks for him to work on every single day. You see, Kenny simply can not structure his days...not at all. So we literally made a schedule for every hour of each day. We made a list of "projects" he can work on during "Project Time" each day on non-school days, so that he doesn't spend hour upon hour in front of a screen. He added in physical time where he will do some sort of [physical activity each day. We talked about what it means to balance productive and play time, and how happy lives have a fair amount of both. He was also tasked with creating a list of dreams for his future, so he can start to recognize that he can accomplish a lot more than he thinks, but only if he has some targets and goals...and he realized he has given up any goals, and so it was an effective eye opener for him.

It is so damned hard to be Kenny. I hurt for him far more than I write about. He is a happy young man, surprisingly so, considering all he faces each day, and he credits God with giving him an extra measure of happiness so that he can make it through each day without feeling crushed. I have no doubt we will find ways to engage him and keep him on track, and honestly, I think he is entitled to this little period of grief and giving up...but it was time to address it now, and I think I saw a little light in his eyes as we honestly shared about what expectations need to be, and how far we think he can go in this world...which is quite far, but not if he doesn't share that vision. He began to get a little excited as we talked about projects he could explore, which are simple but such things as using adult paint by numbers kits, working on puzzles, building simple woodworking kits, writing stories, taking on more responsibilities with the dog, and doing all of these without suggestion from us would be the goal. It is hard having a young adult who has no clue what to do with their free time, and needs to have suggestions offered constantly. That is our life with Kenny. Our one summer without the structure of ongoing part-time school has turned into a hard one for him, something I hadn't quite anticipated to the degree we are seeing. As his caretaker, that was my fault, and I am learning as we go along, too.

Then there is Matt, who is having the time of his life at Civil Air Patrol Flight Camp. He traveled there by himself through airports, has kept a rigorous schedule and had to study his tail off for ground school while there. He needs almost no direction and is completely self-motivated. He had 10 1/2 hours of flight time, though there was a plane malfunction while he was starting his solo flight and the instructor had to take over, so he didn't get to log an official solo flight towards his pilot's license, but he can get that handled here at home. They were working from 7:00 am to 8:00 pm each day and he wrote a couple of brief emails explaining he was exhausted from learning so much, but enjoying himself a lot.

One son, firmly stepping into manhood, seemingly effortlessly.

One son, wanting it desperately and uncertain what that looks like, or how to get there.

The juxtaposition is hard to "not see", and it feels achingly unfair. It leaves me wondering daily how I can level the playing field. How do we celebrate one's accomplishments without causing pain when the other struggles so mightily? How do we juggle the disparate needs in our family, yet support and encourage one another with recognition offered for achievement that may not look as "cool" and yet may be real progress? How do I help all our kids walk through the world seeing all they can accomplish rather than focusing on what might be impossible?

I am constantly doubting myself, and live with the uncertainty that comes from having no Owner's Manual on how to parent each of this extraordinary souls well. Having so many virtually the same age means these things rub up against each other more, and yet thus far we appear to have avoided the sibling issues that are the norm, and most often compassion and acceptance are exhibited. However, it still doesn't change the fact that some will move forward faster and further than others, and the inequity is due to circumstances beyond the control of any of us...and it occasionally hurts. Maybe it hurts mom even more than them.

Tonight as I write, I hold back the tears that are wanting to fall for one, and I smile as I acknowledge a milestone event for another. I remind myself that for one, simply getting up each morning and taking care of personal hygiene without reminders is a huge win, while for another the goals are far higher...and for each one of them, success is success, no matter how it looks.

In reality, that is how it is for all of us. To have a healthy outlook one has to recognize that the world is unfair, we do our best, and we must measure our progress against ourselves and not others.